Imagine the moment a new mother holds her baby for the first time and senses something that doesn’t feel quite right — perhaps the little one’s feet not moving as expected, or the curve of the spine seems unusual. In that instant, a whisper of worry arises: What does this mean for our child’s future? That delicate blend of love and vulnerability is a reality for many families.
Consider Ruth Madeley, the British actress born with spina bifida, who today graces television screens while advocating for disability awareness. Her story is a powerful reminder that although these congenital conditions develop before birth, they do not define a life.
Every year, October 25 is marked as the World Spina Bifida and Hydrocephalus Day, dedicated to spreading awareness about two serious congenital conditions that affect thousands of children worldwide. Though both disorders originate before birth, timely screening, proper maternal nutrition, and early medical care can dramatically alter their impact.
Spina bifida is a type of neural tube defect (NTD) that occurs when the spinal cord and the bones protecting it fail to form properly during early pregnancy. “A form of neural tube defect known as spina bifida is caused by improper spinal cord and spine formation in the early stages of embryonic development,” explains Dr Bala Raja Sekhar Chandra Yetukuri, senior consultant, Neuro & Spine surgeon, Yashoda Hospitals. He adds, “Within the first 28 days of pregnancy, the neural tube — which later forms the brain, spinal cord, and surrounding tissues — normally closes. When it fails to do so completely, a gap remains along the spine, leading to varying degrees of spinal and nerve abnormalities. The severity depends on the size and location of the opening and the extent of spinal cord involvement.”
Hydrocephalus, often associated with severe forms of spina bifida, occurs when cerebrospinal fluid (CSF) accumulates in the brain’s ventricles. This buildup increases pressure inside the skull and may lead to vision issues, developmental delays, or an enlarged head. “Because of disturbed CSF circulation pathways caused by brain abnormalities, the two conditions frequently coexist,” Dr Bala Raja explains.
Spina bifida has a multifactorial origin — influenced by genetics, certain medications, environmental factors, and nutritional deficiencies, particularly folic acid deficiency.
Dr Bala Raja emphasises that the condition is largely preventable: “To significantly reduce the risk, women who are considering pregnancy should take folic acid supplements before conception and continue through the first trimester.”
Meanwhile, Dr Dhanunjaya Rao Ginjupally, senior consultant neurosurgeon at Apollo Hospitals, Jubilee Hills, adds, “The exact causes aren’t always clear, but lack of folic acid before and during early pregnancy is a major risk factor. Genetics, certain medications, diabetes, or infections during pregnancy can also play a role.”
Improving outcomes for children with spina bifida depends on early diagnosis. Most spinal abnormalities can be detected during antenatal screening through ultrasound between the 18th and 22nd weeks of pregnancy. In some cases, fetal MRI and Maternal Serum Alpha-FetoProtein (MSAFP) testing offer further confirmation.
“Early diagnosis allows parents to plan for specialised care at delivery and receive proper counselling. Advances in prenatal and postnatal surgeries have significantly improved outcomes, reducing complications and enhancing motor function,” notes Dr Bala Raja.
Living with spina bifida and hydrocephalus
Children born with these conditions often face lifelong challenges, but with timely medical care, family support, and societal awareness, they can lead fulfilling lives. “The good news is that both conditions can often be detected early and managed with appropriate treatment. Raising awareness, ensuring maternal nutrition, and supporting affected families can help them lead healthier, more informed lives,” concludes Dr Dhanunjaya.
